Uploaded November 2023 | Updated September 2026, 1 week ago
At the 2023 Regional RNDS, Dr. Benjamin Greenberg gave a talk on the study to investigate the safety of the transplantation of human glial restricted progenitor cells into patients with transverse myelitis. Dr. Greenberg shared more about the background of stem cells and the status of this study. The Q-Cell study is the first of its kind to look at the potential use of stem cells to repair the damage in spinal cords affected by myelitis, or inflammation in the spinal cord.
At the 2023 Regional RNDS, Dr. Benjamin Greenberg gave a talk on the study to investigate the safety of the transplantation of human glial restricted progenitor cells into patients with transverse myelitis. Dr. Greenberg shared more about the background of stem cells and the status of this study. The Q-Cell study is the first of its kind to look at the potential use of stem cells to repair the damage in spinal cords affected by myelitis, or inflammation in the spinal cord.
![205. Dr. Alexandra Kornbluh
The Community Meets Clinic podcast series introduces clinicians and healthcare personnel specializing in rare neuroimmune disorders. In this episode, Krissy Dilger of SRNA interviewed Dr. Alexandra Kornbluh from Childrens National Hospital in Washington, D.C. about her role and journey into neurology and neuroimmunology.
Dr. Kornbluh discussed her interest in the fast-paced nature of neuroimmunology and her involvement in clinical research, particularly in MOG antibody disease (MOGAD) [00:01:32]. She elaborated on the multidisciplinary approach at Childrens National Hospital that supports comprehensive care and ongoing research for pediatric neuroimmune disorders [00:04:58]. Dr. Kornbluh emphasized her commitment to holistic care and the future advancements in treatment and diagnostics for rare neuroimmune conditions [00:05:44].
Alexandra Kornbluh, MD is Associate Program Director for the Child Neurology residency and Co-Program Director of the Pediatric Neuroimmunology Fellowship at Children’s National Hospital in Washington, D.C. She completed her medical training at the Johns Hopkins School of Medicine and her pediatric and child neurology residency training through Nationwide Children’s Hospital in Columbus, Ohio. She then pursued additional subspecialty fellowship training in pediatric multiple sclerosis and related demyelinating diseases. Through this fellowship, she gained expertise in caring for both children and adults across the age-span of neuroinflammatory diseases at the Children’s Hospital of Philadelphia and the University of Pennsylvania.
Dr. Kornbluh sees patients from the greater Washington, D.C., area as well as second opinion consultations for pediatric demyelinating disease and related disorders within the multidisciplinary neuroimmunology program. She also evaluates patients with headaches and provides general neurology care for patients.
Dr. Kornbluh serves as the Director of Investigational Therapeutics through the pediatric neuroimmunology program and is the principal investigator for clinical research studies in pediatric demyelinating conditions. Her research interests include pediatric multiple sclerosis (MS), myelin oligodendrocyte glycoprotein antibody-associated disorders (MOGAD), and other related demyelinating conditions. You can view her medical profile here:
https://appointments.childrensnational.org/provider/alexandra-behar-kornbluh/2359826
01:32 Dr. Kornbluhs Journey into Neuroimmunology
03:29 Focus on Rare Neuroimmune Disorders
04:58 Childrens National Neuroimmunology Clinic
05:44 Multidisciplinary Care Approach
07:31 Personal Insights and Self-Care
08:25 Message to Families and Final Thoughts
09:48 Hope for the Future 205. Dr. Alexandra Kornbluh](https://i.ytimg.com/vi/qaYjK7b0caE/mqdefault.jpg)




![1307. Parenting is Hard | Part 3
At the end of this mini-series, we will host a Q&A episode where Barbara will answer questions from the community. To submit your question, please visit https://srna.ngo/submit
In the third part of the “Ask the Expert, Research Edition” mini-series, “Parenting is Hard,” Krissy Dilger of SRNA was joined by Barbara Babcock to further explore her research concerning the changing beliefs around parenting when a child has been diagnosed with a rare neuroimmune disorder. Barbara discussed how beliefs around being fair as a parent could change and the various sub-themes supporting this idea, including redefinition of fairness and the challenge of balancing attention among children [00:03:30]. She highlighted the impact of societal and historical contexts on parenting norms and the struggles parents face in managing new caregiving responsibilities and learning new skills [00:12:45]. The importance of redefining what it means to be a good parent in the context of a child with additional needs was emphasized throughout the episode [00:24:00].
Barbara Babcock works as a Family Therapist in a child and adolescent mental health outpatient unit in the United Kingdoms National Health Service. In her private practice, she works with individuals and couples who are navigating challenging health issues and wish to get their lives back. She obtained her Master of Science in Family Therapy from the Institute of Psychiatry, Psychology, and Neuroscience at Kings College London. Barbara also has a Master of Arts in Coaching Psychology/Psychological Coaching and her dissertation research focused on the impact that a systemic approach to coaching has on the wellbeing of adults who have a rare neuroimmune disorder and their primary caregivers. Previously, she was Chair of the Transverse Myelitis Society, from 2013 to 2016, and led their Family Weekend from 2015 to 2019, an event to support families who have a child/adolescent with a rare neuroimmune disorder to discover their potential through challenging outdoor activities. She had transverse myelitis in 2008 and is originally from Pennsylvania, USA. You can contact her at barbara@returntowellness.co.uk and her website is www.returntowellness.co.uk
00:00 Introduction
00:27 Meet the Expert: Barbara Babcock
01:38 Exploring Parental Beliefs and Fairness
03:37 Balancing Attention Among Children
07:49 Cultural and Societal Influences on Parenting
11:08 Challenges in Managing Illness and Fairness
19:37 Learning New Skills and Roles
25:52 Redefining Good Parenting
27:43 Conclusion 1307. Parenting is Hard | Part 3](https://i.ytimg.com/vi/rxP73iY4HjA/mqdefault.jpg)
![2024 RNDS | Rehabilitation Strategies
At the 2024 RNDS, Dr. Christina Sadowsky, Dr. Clarice Sinn, Dr. Heakyung Kim, and Dr. Philippines Cabahug shared insights on the importance and timing of rehabilitation following a neuroimmune diagnosis [00:01:16]. They emphasized the need for immediate rehabilitation as soon as a person who is diagnosed is medically stable, and highlighted the importance of both physical and psychological aspects of recovery [00:02:45]. The panelists discussed how tailored rehabilitation plans, including exercise therapy, can aid in managing symptoms like spasticity, bowel, and bladder issues, and improve overall quality of life [00:09:35]. They answered audience questions from the audience and provided guidance on finding appropriate therapists for specific needs [00:17:18]. Please note that the information shared during this session is for informational purposes only and is not medical advice.
You can view the presentation slides here:
https://files.wearesrna.org/symposia/2024_rnds/slides/2024RNDS_Sadowsky_Rehabilitation.pdf
00:00 Introduction and Panelist Introductions
00:49 Importance and Timing of Rehabilitation
02:18 Rehabilitation Approaches and Strategies
04:56 Holistic Rehabilitation: Beyond Physical Therapy
05:43 Addressing Common Rehabilitation Questions
09:06 Mental Health and Rehabilitation
17:18 Questions from the Audience
20:17 Adaptive and Alternative Therapies
33:51 Setting Rehabilitation Goals
39:00 Conclusion and Final Thoughts 2024 RNDS | Rehabilitation Strategies](https://i.ytimg.com/vi/skxn6nlPaH0/mqdefault.jpg)
![Ask the Expert 1407. Open Q&A on Acute Disseminated Encephalomyelitis (ADEM)
Krissy Dilger of SRNA moderated an open Q&A on acute disseminated encephalomyelitis (ADEM) with pediatric neurologist Dr. Linda Nguyen of the University of Texas Southwestern Medical Center. Dr. Nguyen discussed how widespread MOG antibody testing has shifted many cases previously labeled ADEM to MOG antibody-associated disease, recommended MOG testing at onset, and reviewed relapse risk, mimics, and follow-up imaging [00:05:07]. Questions from the community covered acute treatments, recovery, guidance on pseudo-relapse, rehabilitation, and transition from pediatric to adult care [00:14:41].
Dr. Linda Nguyen completed her MD, PhD training at West Virginia University in 2017, and then pediatric neurology residency at the University of California, San Diego in 2022. She then completed a combined pediatric and adult neuroimmunology fellowship at the University of Texas Southwestern in 2024, where she now serves as an Assistant Professor in the Department of Pediatrics. Dr. Nguyen currently sees patients in the Demyelinating Disease Clinic at Children’s Medical Center Dallas.
00:00 Welcome and Guest Intro
01:08 What Is ADEM
01:51 Causes and Who Receives This Diagnosis
02:55 Early Signs and Onset
04:20 Diagnosis and MRI Criteria
05:07 MOG Antibodies and ADEM
07:21 Testing and Relapse Risk
09:06 Recurrent ADEM and Labels
12:34 Mimics and Differential Diagnosis
14:41 Acute Treatment Options
15:38 Recovery Timeline and Rehab
17:47 Long Term Effects and Seizures
21:23 Family Support and Accommodations
24:47 Follow Up Imaging and Relapse Signs
27:25 Managing Fatigue and Headaches
29:31 Supplements, Vaccines, and Genetics
33:40 Pseudo Relapse and Exercise Balance
37:41 Research and Predicting Outcomes
43:14 Transition to Adult Care
45:36 Weakness Sleep Issues and Final Thoughts Ask the Expert 1407. Open Q&A on Acute Disseminated Encephalomyelitis (ADEM)](https://i.ytimg.com/vi/tA7Mvb5d79s/mqdefault.jpg)


